Nye 21
It ’s funny, looking back a year at all the sentiments from last New Year’s Eve, a recurring theme seems to be “At least this time next year, everything will be better and this pandemic will be over.” Ha ha, weren’t we all funny? Yeah, my message to the future, on NYE 2022? I hope you’re st ill alive and civilization hasn’t crumbled. Here’s hoping we’re not all eating bugs by then. 2021 was a hard year, but for me, it was also one full of notable and indeed wonderful things. Let ’s stick with those for the moment. Three big things will define 2021 for me. First and very much foremost, I marrie...
Source: Schuyler's Monster: The Blog - December 31, 2021 Category: Disability Authors: Rob Source Type: blogs

The Price of Things
Tomorrow I do the thing I hate doing the most. I say goodbye to Schuyler again.We ' ve done this before. We ' ve been doing this for the past year. More than a year, actually. Schuyler lives here in Virginia with me, and then she returns to her mother in Michigan. It started out as an even split, but as Schuyler has continued job training in preparation for reentering the workforce, Virginia has become more of a permanent home for her. After she returns to us, she ' ll begin actual employment, and her residency in Virginia will be mostly full-time.In other words, I have no cause for complaint. And furthermore, I actually h...
Source: Schuyler's Monster: The Blog - December 11, 2021 Category: Disability Authors: Rob Source Type: blogs

Interesting Times
I haven ' t written much here, not for a while. Part of that is the simple fact that blogging has become something of a dying... well, I won ' t say " art " , exactly. Writing is writing, as far as I ' m concerned, but as a way to deliver the written word, blogging has sort of lost its shine with the cool kids. Since I am passionately devoted to being as uncool as humanly possible (ever see my high school senior photo, the one where I have a firm grip on both my trombone and my virginity?), I ' m going to go back to blogging for a while as I get deeper into my new book. I find I miss this kind of writing, and it helps me p...
Source: Schuyler's Monster: The Blog - November 28, 2021 Category: Disability Authors: Rob Source Type: blogs

Eighteen Years of Monstering
 If you ' ve read Schuyler ' s Monster, you may remember the opening scene, the meeting with a neurologist at Yale at which we received Schuyler ' s Polymicrogyria diagnosis. In that scene, I described the feeling this way:At the time, when friends would attempt to comfort us by saying that at least we had an answer, at least we knew what the problem was now, I explained how it felt. Imagine walking through the woods at night, all alone. In the darkness behind you, something is following, stalking you. You can hear it disturbing the leaves as it moves, and while it never goes away, it remains hidden from view. In your...
Source: Schuyler's Monster: The Blog - July 31, 2021 Category: Disability Authors: Rob Source Type: blogs

Christmas 2020
On this Christmas morning, I want to reach out to everyone whose lives have radically changed this year. That ' s certainly true of Schuyler and me, and only some of that is due to the pandemic. Last Christmas was something of a disaster, mostly because we were in the middle of a divorce, and you can say all you want about the very best intentions, but that word " amicable " still has a lot of room for heartbreak.We ' re here now, in a new town with new people we love around us, and that ' s a positive thing, but it ' s also challenging. Christmas is the season of joy and connecting with the ones you love, but it ' s ...
Source: Schuyler's Monster: The Blog - December 25, 2020 Category: Disability Authors: Rob Source Type: blogs

Dispatch from the Land of the Eighty-five Percent
So. I suppose we have some catching up to do.Schuyler and I are in Virginia. Where we live.Well, that ' s partially true. Schuyler lives here half the time, splitting her time from month to month with her mother, who now lives in Michigan. It ' s not complicated on paper, as divorce rarely is, but in practice it ' s probably going to be fraught with unforeseen peril, as divorce almost always is. I have Schuyler here with me for one more week, and then my month without her begins. I think we can all predict how well I ' ll take that, but there it is. The price of change. Perhaps it ' s the fee for exchanging the predictable...
Source: Schuyler's Monster: The Blog - September 12, 2020 Category: Disability Authors: Rob Source Type: blogs

Polly at Seventeen
Today is the seventeenth anniversary ofSchuyler' s diagnosis of polymicrogyria.There have been times in the past seventeen years when that felt like a thing to be memorialized, a great tragedy like a hurricane or an assassination, both of which feel like an appropriate description of how it felt to stand in the face of such an event and watch someone I loved taken away from me.But over the years, I guess that ' s changed, or at least blunted. Schuyler wasn ' t taken away by her diagnosis. Her little monster didn ' t arrive that day; it merely stated its long-overdue" How do you do? " I thought I learned about the future th...
Source: Schuyler's Monster: The Blog - July 30, 2020 Category: Disability Authors: Rob Source Type: blogs

A Short Ride in a Fast Machine
There ’s a dream I’ve had repeatedly in my life, including quite recently. In this dream, I am driving down a long, remote West Texas road at high speed, with no other cars around me. I’m going fast, in that way you hurtle forward on a desert highway when the perspective tricks you into picking what feels like leisurely pace until you look down and you’re doing ninety miles per hour. The sun is setting, the sky exploding in reds and oranges and a deepening purple.Suddenly, without warning or drama, the wheel comes off in my hand. I ’m holding it, gripped with panic, as the car continues down the road. I hit the b...
Source: Schuyler's Monster: The Blog - November 24, 2019 Category: Disability Authors: Rob Source Type: blogs

Sixteen Years of Monster Life
Sixteen years ago today, everything changed. I mean, nothing changed, but everything changed. Schuyler was diagnosed with polymicrogyria on this day in 2003.I think back to that day sometimes, a day that I described in the prologue to my book. In a lot of ways, it marked an end to the person I was at the time, probably a lot more fun but also more selfish and seriously lacking in self-reflection. It also began my transition to the person I am now: smarter, more sensitive to the people around me, more socially aware and a stronger advocate, but also more cynical, more curmudgeonly, a bit of a scold and a wet blanket, a...
Source: Schuyler's Monster: The Blog - July 30, 2019 Category: Disability Authors: Rob Source Type: blogs

Three Weeks Broken
Here ’s a fun fact that I just recently learned. When they (the people who make up such things, almost certainly with a clipboard in hand) determine survival rates for people who survive procedures such as open heart surgery, they don’t just count those who made it off the table and back to their roo ms. For some major categories, they actually measure the rate of survival for thirty days, beginning with the surgery and ending with the cake decorated with“ONE MONTH DEATH-FREE, WOO!” in heart-healthy icing on top.So this is perhaps a bit premature. Watch for a posthumous“edited to add: Oops, never mind, yikes…...
Source: Schuyler's Monster: The Blog - March 8, 2019 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs

Just One of Those Things
Last week I had a heart catheter procedure, to measure the amount of blockage in my shitty, shitty heart and possible put in a stent or two. Put them in, send me home, back to work in a day or two, right?That ’s not what ultimately happened. No, I’m going to have open heart bypass surgery. Well. I didn’t see that coming.Tomorrow afternoon, I meet my heart surgeon, hopefully to get this thing scheduled. I ’ll meet the man who will literally have my life in my hands. So, you know, big day.I ’ll admit it, I’ve been in a weird, unpleasant emotional place ever since I found out where this whole thing is heading. I...
Source: Schuyler's Monster: The Blog - January 15, 2019 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs

Matters of the Heart
So I guess I ’m going to talk about this thing, which has nothing to do with disability advocacy or Schuyler, except of course it does, because those are the parts of my life that I couldn’t separate from the rest even if I wanted to, and I very much don’t.Last March, as you might remember, I had a hospital scare that ended in me getting my own health regimen back on track. That day sucked, to be sure, and it was followed by plenty more that were also pretty awful. But it ended up for the best, I suppose. I got better and my health improved to a point where it was more solid than it ’s been in years. I ended up tra...
Source: Schuyler's Monster: The Blog - December 17, 2018 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs

Lily Pads
Okay, so let ’s get this out of the way first. I was wrong. I was very, very wrong.A few years ago, I wrote a blog piece about something I saw online, a photo of a group of speech language professionals seated around a table, communicating with each other using AAC devices. To my reactionary eye, the photo was troubling. It felt like just one more exercise for able-bodied people to “get” what it must be like to have a speech disorder like Schuyler’s. It looked bad to me in part because I was seeing it linked on the Facebook page of an AAC company, which felt unseemly to me. Worse to my eyes was the fact that they s...
Source: Schuyler's Monster: The Blog - October 17, 2018 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs

Uncharted: An Exploration of AAC, Advocacy and Agency
October 11, 20186:00pmUncharted: An Exploration of AAC, Advocacy and AgencyFeatured speaker, with Schuyler HudsonBridgeway Academy2500 Medary Ave, Columbus, Ohio 43202Please RSVP to Janelle Maur atjmaur@bridgewayohio.org to let us know if you will be attending. $5/person and $20 per family maximum. CASH ONLY at the the door. Bridgeway Academy welcomes Robert Rummel-Hudson and his 18-year-old daughter Schuyler for a presentation and discussion about advocacy and agency for users of AAC (Augmentative and Alternative Communication).Robert Rummel-Hudson is an author and advocate based in Plano, Texas.His 2008 memoir,...
Source: Schuyler's Monster: The Blog - August 27, 2018 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs

The Few Things
There ’s a lot I could tell you about Schuyler’s trip to Gold Coast, Australia for the2018 International Society for Augmentative and Alternative Communication (ISAAC) Conference, where she took part in the Dare to LEAD workshop for selected participants who use AAC technology to communicate. There are a great many stories to tell about our trip.I could tell you about the sense of adventure that accompanied a trip to the other side of the planet, or about Schuyler ’s joy in discovering all the differences both tiny and significant between the US and Australia.I could tell you all about how she finally got to meet my ...
Source: Schuyler's Monster: The Blog - July 30, 2018 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs